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Isaiah’s Story

Thank you for checking in on our big 10 year-old Isaiah Jeffery!  His challenges are daily as he battles the brain damage he sustained before he was born.  High muscle tone (tightness) and his inability to walk or talk make each day a unique one.  But Isaiah's smile, persistence and great sense of humor keeps us all moving forward.  In addition to his Cerebral Palsy, Isaiah was diagnosed with a heart condition called Hypertrophic Cardiomyopathy (HCM). Visit here to watch Isaiah's progress.

Latest Journal Update

Monday and Tuesday

Isaiah woke up on Monday a little sluggish, but comfortable.  All his tummy troubles seemed to be better and we were able to get him sitting at the side of his bed for awhile without pain.  Later in the day he got in his wheelchair and we went down to the play room where he got to play xbox and he was very happy about that.  Before bed Dad was flipping through channels and came to a UFC fight and Jon "Bones" Jones was competing....Isaiah was so excited he kept setting the heart monitor off!  It was nice to see.

All though we got the okay to head out Monday night, we decided to stay and give him one more night before the 2+ hour ride home in  his wheelchair, since the longest he had been in it was an hour.  Tuesday morning we got squared away with supplies, meds and a big book of stretches to do daily.  Kids who typically have this surgery are more like Natalie and are able to walk going into surgery, but lose that ability and have to regain it.  For them it gives a more typical walking gait, and loosens muscles that are to tight to let them progress in therapy.  This would be followed by 2 weeks on inpatient PT and OT followed by months of daily therapies to get them back to where they were and beyond.  For Isaiah it was done for comfort, and for preventing more issues with his hips and spine.  We still will be doing plenty of therapy, although it will be based on getting his muscle strength back to standing in his stander, and improving his arms now that he doesn't have to fight all the tone in his legs.

I hope that all makes sense!  I am a little tired and overwhelmed at the week's schedule as we get Isaiah some new braces, get him squared away at Children's in Minneapolis and prepare for the start of the school year.  I didn't realize how tired I was until I got home with 3 loud, excited healthy children and a dog!  Lots of dishes, fruit flies and cleaning that will not be tended to on a regular basis until their school starts.  My classes started Monday and I just ordered my books, so hopefully everything will fall into place this week.  I am going to go by some wise advice my aunt Kerry gave me once, "You can only do one thing at a time."  So I will be doing just one thing at a time today.
Isaiah woke up in a little pain this morning, but happy to have Jeremiah to hang out with him in his own room, in his own bed.  I just got him comfortable and he will be getting up and dressed for his day a little later.  We will be going to St. Paul this afternoon for braces and to Buffalo tonight for school orientation!  Natalie and Nathan have their last therapy today@ Minnetonka Pediatric Therapy Center (after two years of going!) as they will be taking an extended break for the start of Kindergarten.  And somehow we need to squeeze in school supply shopping.  One thing at a time!  Grandma Kelly to the rescue today:) I will update in a few days on how therapy evals go and I am sure Isaiah will want to show off his new braces.